Can I Say I’m Deaf?
Well, first off, yes. But, let me explain.
I was born three months early, half of a fraternal twin duo that made its way into the world early because we were bored of playing Monopoly inside my mother’s womb and wanted to see what other board games were available. At least, that’s what my mother tells me. I’ll leave it up to you to discern the truth from the truth-stretching.
The joke goes that my twin sister stole my hearing, and I stole her height (what little I could wrangle from her). She benefitted more from the exchange: her hearing is exceptional, beyond the average ability. I am slightly below average height for a male, but slightly above average height for a fraternal twin that was born three months early. I’m guessing there.
My hearing-loss went undiagnosed for some five years. My mother knew something was wrong. I didn’t respond to loud noises or my name being called if my back was turned. Upon seeing my sister thrashing about on the floor after being told “no,” I would drop to the floor and act out my own silent mimicry of her tantrum. I had no idea what I was doing, I had no idea what was going on, but I liked to copy what my sister did. If she had bows in her hair, I would ask for bows in mine. If she threw a tantrum, I threw my own silent tantrum. If she played house, I would play the role of the father leaving the house on an international business trip and forgetting his passport. You know, the usual things. She would wake up after a long car ride as my mother undid the Velcro-d seatbelt, the ripping noise startling her awake. I would remain asleep, undisturbed until I was picked up out of my car-seat.
But I passed all of my hearing tests. X-rays showed no issues. CAT scans revealed nothing. All of the doctors told my mother that my hearing was perfectly fine, as I sat in a chair next to her ignoring their conversation. My mother went to numerous doctors and audiologists, explaining each time the newest issue that had made her sure I couldn’t hear properly. I’d sit as close to the TV as I could, unbothered by the volume coming out of it. I’d follow my sister from room to room, and to call me to dinner required calling my sister whom I would then follow.
As a child, a hearing test is a simple matter. The person conducting the test presses a button, this plays a beep at a certain decibel and frequency: loud and high-pitched, quiet and low-pitched, etc. If you hear the noise, you drop a marble into the marble-run. As an adult they replace the marbles with a clicker — much less fun. The test runs through a series of noises that attempt the define the outer limits of your hearing — when do you stop hearing the beeps? It turned out to be an easy test to cheat. When the person conducting the test pressed the button, I would drop a marble into the marble-run. I wasn’t fussed about whether or not I had heard anything, I wasn’t about that auditory life. I just liked doing the correct thing, which, as far as I was concerned, was to drop a marble when the woman behind the glass screen pressed a button. I could see her hands.
All it took was one audiologist to hide her hands from my view, for my hearing loss to be diagnosed. I have a severe to profound hearing loss. The cause was a lower than normal number of hairs in the fluid filled canal in the inner ear called the cochlear. The hairs carry vibration through the fluid. Less hairs, less vibration, less hearing. In the higher frequencies, my hearing is essentially non-existent. In the lower frequencies I can hear a little better, as long as it’s loud. It explained why I used to respond to my father’s voice more frequently than my mother’s. It explained why thunder frightened me. But there is also a clarity issue, what sounds I can hear are muffled and vague.
In spite of this, somewhat miraculously, my ability to talk developed normally. Evidently, I had just enough hearing to have been able to catch on to the way language sounded. I taught myself to read before starting preschool (well, I couldn’t hear, what else was I going to do?) and became an avid reader. I could hear just enough to know what words usually sounded like, and I read enough that I developed an unnecessary vocabulary. One of those precocious children who says words they can’t pronounce properly because they’ve never heard them said out loud, only ever read them. I also developed a great ability to read lips. It was a necessary tool in those early days without hearing aids, and with early models that didn’t help enough. The tic that stuck with me for a while was my inability to pronounce “r”s properly. “R”s and “w”s were interchangeable in my mind, for the sound they made. Turns out I was wrong. The same teacher who pointed out this error also asked me one day why I always looked at his lips and never in his eyes when he was talking. Thanks to him I think far too much about how to say the word “write,” and I don’t stare at people’s lips anymore. Much.
So, I got hearing aids. Strong ones. Bog-standard hearing aids aren’t powerful enough for me. The hearing aids that are marketed to the majority portion of the deaf and hearing-impaired community are far too weak to work for me. I remember getting an imprint of my ear so the hearing aid would fit properly. They squirted cold pink putty into my ear, and gave me some to roll into a ball that I could use as a bouncy ball for all of twenty minutes until the mould could be removed from my ear, and the ball of putty lost any ability to bounce. The hearing aids were large. A hunk of plastic sat in my ear, connected by thick tubing to an almost-but-not-quite-flesh-coloured housing that stuck out from behind my ear, pushing my ears forwards and away from my head.
They were noticeable. I was bullied. Every five or six years we would upgrade. My ability to hear, thanks to the development of the technology, increased with each new hearing aid. The housing, tubing, and plastic mould in my ear also got marginally smaller with each new hearing aid.
As the hearing aids got better, I developed listening skills that had been beyond my means before. Previously, I had been largely tone-deaf. My hearing aids focused on turning everything up, not too concerned about clarity. Slowly they moved away from amping up volume to clearing up the sound, actually turning down the audio slightly from the extreme volume I’d become adjusted to. Background noise could be reduced. Speech and important sounds could be focused on.
My family had always listened to music casually. Music soundtracked car trips and played often in the house — leaking out from under bedroom doors and playing from the speakers in the living room. I liked it, but I didn’t get much from it. I sang along tunelessly, unaware of the rise and fall of melodies and instrumentation. I just heard the noise, vaguely. As my hearing aids got better I started hearing chords and different instruments. I started hearing the individual notes in melodies, the movement of the music.
I became obsessed. I listened to music relentlessly. I had to buy massive over-the-ear headphones that could actually fit around my ears and hearing aids. The wrong size would sit awkwardly on my hearing aids and cause the microphone to feedback, whistling shrilly over the music. Others often left me with a mild headache from the pressure of the cups pressing my hearing aids into my head. But I loved it, I loved rediscovering songs that I could now hear melodies in. I loved finding new artists and music to listen to. I loved being able to listen to music, something I felt like I shouldn’t have been able to. I didn’t take it for granted.
I taught myself guitar. I wrote god-awful songs — the ability to hear notes hadn’t translated necessarily into an ability to sing the notes, shockingly. As I got older, I started to get opinionated about music. The nerve. At university I wrote music reviews and a music-based column for the university newspaper. I hosted a radio show about lesser-known music — I titled it “Songs You Probably Haven’t Heard” thinking it was tongue in cheek and ignoring the fact that I didn’t say I was deaf, or explain the joke to my listeners. I was the archetypal pretentious university music nerd/wanker. I eventually became the editor of the paper’s Music section, and continued to write about gigs and album releases under the title “Deaf Music Critic.” I now write for two separate music publications (www.unrattle.com, which I co-founded, and www.giglist.com, which I didn’t) and still spend almost all of my time listening to music, critically or not.
So, I can hear. But I can’t.
To wake me up, you have to shake me or throw something at me. I wear a step-counter whose vibrating alarm is my only chance to wake up to an alarm.
I struggle with new voices, new accents, people whose methods of speaking I have yet to become accustomed to.
When one, or both, of my hearing aids breaks I spend my days in a foul mood, avoiding other people, angry that I can’t hear properly and that communication has suddenly become 100x harder. I never learned sign language. I never needed it. But then, most of the general public doesn’t know sign language anyway.
I wrote a play about all of this when I was at uni. I interviewed audiologists, researched community-based and legal definitions of deafness and disability. I point-blank asked if I was deaf. I asked if I was allowed to say I am deaf. Some in the D/deaf community point to the capitalization of the “d” in deaf as an expression of the type of deafness. Capital “D” basically means virtually completely deaf — someone who doesn’t wear hearing aids or a cochlear implant, someone who communicates with sign language. Lower-case “d” pretty much means everyone else. So, I’m deaf.
When I tell someone I’m deaf, it requires explanation. There are all kinds of expectations that people have of the deaf community, assumptions that are made immediately upon learning of someone’s disability. These assumptions are made immediately, arising from expectations that are built up over time. They often run up contrarily, in some way, against the person in question. There’s an immediate disparity. “You don’t look deaf.” “Oh, wow, I didn’t even realize.” “You do a really good job of hiding it.” “But you’re talking to me?” And this is just what happens in person.
When I write it in a letter or description, it requires explanation. It’s convenient, quick, accurate but also not necessarily in line with the expectations that the label brings about. But, then, those expectations are not mine to fit. I often find myself explaining further, when it comes up in writing. It becomes more and more defining of who I am as I spend time attempting to explain specifically what that means for me. But it shouldn’t define me. And it shouldn’t be up to me to quantify or explain my deafness to every person I talk to. I shouldn’t feel like I need to subvert expectations of what my disability means. Disability isn’t convenient. It just is.
I struggle with saying I’m deaf, not because I don’t think I am, but because of my urge to explain more, expand, and attempt to integrate myself into the able-bodied community. I attach a disclaimer to myself: ‘don’t worry, safe to approach, interaction does not require excessive effort on your behalf.’ I’m deaf, and it means what it means, just not necessarily what you think it means.
